Patients, the public and the uses of big data; practical engagement, education, scrutiny and leadership

点击翻译按钮获取中文摘要

The types and extent of health data that exist are growing rapidly, as are the methods via which these disparate sources can be linked and used to generate new insights and understanding. As a result, the potential of big data and analytics to improve lives is also increasing exponentially. But alongside this growing potential there are also growing challenges around the legality, legitimacy and understanding of what is done with the data, how it is done, and how it is controlled. There is also an ever-increasing interest in the media about big data. The media tend to focus on the risks of health data, with stories which are largely based on the negative aspects which increased data and usage brings, such as risks, threat, exploitation, hacking, theft and loss. However, these largely negative messages in the media are targeted at the public, whereas health data is about patients. This contrasts strongly with the views, particularly of patients, that there are significant benefits which need to be equally well argued, so that patients and the public can make informed, balanced choices about the uses of health data for individual and societal benefit.Currently little work has been undertaken to quantify the views of patients and the public and this poses a major risk to all work undertaken in LIDA. This is exemplified by the care.data debacle where major public disquiet about the use of health records without adequate public consultation and understanding of views on how data should, and should not, be used led to a significant freeze in health data research. Although data are now moving more readily within the research system, concerns remain and there is a growing risk that public fear about how their data are used may again halt big data health research. These concerns are likely to increase with the planned implementation of the National Data Opt-Out scheme from March 2018 and the adoption of the General Data Protection Regulation (GDPR) in May 2018.My programme of work will seek to redress this balance by undertaking research into public views on the use of 'big data'. I will then use the evidence generated to inform the development of a well-informed and coherent, but independent, patient voice that will oversee all work undertaken in LIDA spanning the priority areas of Health Data Research UK The informed and independent body of patient and public representatives that I will develop will then have direct involvement in steering and overseeing research within the LIDA portfolio and seek to mitigate any risks that public concern may bring to the big data analytics.This Fellowship would allow me to extend and build on the work I am already undertaking at the University of Leeds. For example, I am already leading work seeking to put patients at the centre of the UK Colorectal Cancer Intelligence Hub programme (funded by a £3.4 million grant on which I am a Co-Investigator). This Hub involves the creation and exploitation of a large repository of all the UK data relevant to colorectal cancer. Given the volume and scope of the data held on this population we believe it is absolutely fundamental that individuals either at risk of, or diagnosed with the illness are at its heart.